By Joel Smith.
One of the problems with prejudice is that a lot of it isn’t seen as prejudice. But that doesn’t make it right, contrary to popular belief. I spent some time talking to some friends yesterday about accessible medical care – I hope they chime in on their experiences, as it encouraged me to write this post.
One really serious prejudice disabled people face – especially people with neurological and mental disabilities – is getting appropriate medical care.
There’s tons of problems in the current system, all of which could quite easily be changed – if only people in the system would recognize their prejudice and dare to change, to walk away from “tradition” and “the way things are done”.
Some examples:
1. Money! Obviously medical care can be quite expensive, at least in the US, and elsewhere the proper care may not be covered by government insurance, requiring huge out of pocket expenses (example: obtaining a speech device for someone who can speak some of the time only). We’re far too often on the poor side of the wealth equation.
2. Transportation is another huge issue with disability. Anyone who wants to see disabled people participate in society supports enhanced public transportation. Imagine needing to not only need to know exactly when the appointment is, so you can arrange transportation to the doctor, but also needing to know – in advance – exactly when the appointment will be finished, within a few minutes. Yet this is exactly what many disability transit organizations expect. The other option is an expensive taxi for many. If transportation and medical insurance were provided, even to disabled people who work good jobs, I suspect we’d see a lot more employment of disabled people…but that’s off topic, we’re talking about medical care. You need to be able to both get to the appointment and then return home when done.
3. Communication is a major issue, too. The medical establishment has a huge bias towards speech, as they have a huge bias against anyone that takes up their time. Unfortunately for many of us, a written note is the only way we can accurately communicate our needs. I say “unfortunately” because, to medical professionals, the note takes too long to read for a medical professional to actually read it. But it isn’t just communication in the doctor office, it’s communication before and after. We need to call – that’s the ONLY option for 99% of medical organizations. If you can’t use a phone, tough luck, they don’t want to deal with you. Yet even many disabled people who speak have had problems: a friend I talked to was even hung up on multiple times because her voice sounds “like a child’s” (she was seeking a mammogram) when she tried to make an appointment. She was told to quit “fooling around”. After the appointment, we’re expected to call if we have problems. Few medical professionals want to deal with email (they fear that they will be expected to provide free advice that they can’t bill for). So many of us can’t manage to let a doctor know about post-visit complications.
4. Have you waited for an appointment in a doctor’s office? You might have noticed a chaotic environment. Many of us have trouble in that environment, especially when the doctor is inevitably late for their appointment (I know many doctors intentionally tell patients that their appointment time is 15 to 30 minutes before the doctor will be able to see them, assuming an ideal day for the doctor where nothing runs behind! This is not friendly to autistic people or probably anyone else).
5. The physical experience can be overwhelming. Yet few medical professionals understand that we are not simply “faking it” or trying to get “attention” when we make our needs known. Few consider options such as sedation for procedures that most people can “handle”.
6. Too often, medical professionals do not explain things in a way a disabled person can understand, or they get frustrated when a disabled person seeks to know about the procedures being done to them, in a way and with language they can understand. Yet we have a right to give informed consent just as anyone else does – and that requires us to be informed, in a way that we can understand.
I’m sure there are many other problems with us seeking medical care. For me, it’s hard to even mention to someone else that I have a medical problem that needs urgent treatment, and routine treatment – because of these obstacles – often doesn’t occur. This is a big deal for us, as this is life and death potentially.
To medical professionals:
There is a lot doctors and other medical professionals can do. Consider things like giving us the first appointment in the day, so that it isn’t delayed, nor is there a busy waiting room. Give us a way of contacting you as a disability accommodation – sure, don’t feel obligated to answer detailed medical questions that you feel would be best served by another appointment (so that you can bill for it, we recognize you also need to eat) – but let us do the stuff we could do over the phone via email instead. Understand our sensory needs. Do you have an exam room that has a window, so there is natural light, rather than just overhead fluorescent? A quieter place to examine us? Consider that many of us have faced abuse – those of us who faced sexual abuse are going to be very anxious and fearful of disrobing. Don’t assume that we are “crazy” and that’s the reason we are presenting unusual symptoms, as we might really have an unusual illness. Make sure you have concrete evidence, not just “suspicion” before you dismiss a self-report from us. Know that self-reports are extremely difficult for us, and we most likely under-report rather than over-report. Allow for communication differences, not only through using text instead of speech, but also realizing we may not communicate pain in traditional ways. So believe us if we say we hurt, even if it doesn’t look like we hurt.
It’s also important that you train your office staff on disability awareness. Nobody should be hung up on, just because they sound like a child or are hard to understand. They may have an urgent medical need! And some people are going to need a bit of a different procedure than your staff is used to. Give them the authority to deviate in these cases.
It’s hard enough for us to even get to the point where we are willing to try to see a doctor. Please don’t make it impossible for us to actually do this.